Day 1 at Health Datapalooza

It's a conference that brings together more than 1,600 people from the public and private sectors to discuss the use of data in improving better health outcomes. Over a two-day period, Health Datapalooza features more than 60 sessions, 240 speakers, and 13 keynote speakers.

The speaker everyone was waiting for this year was Tom Price, the new secretary of Health and Human Services, former Congressman, and an orthopedic surgeon by trade. The ballroom was packed, and people continued to talk about his talk for the rest of the day.

He presented two goals: making health IT work for clinicians and promoting interoperability.

"This administration is fully committed to fulfilling the promise of health data and IT and to supporting the ingenuity of the folks in this room," said Price.

I had a brief moment of panic when I realized my phone had died and my charger was broken — at a big data conference, nonetheless. I thought, “Yeah, sure, big data is important, but not without power. My entire life is on this phone, and I can't access it!” Perhaps that's what Price meant, when he said health IT needs to work.

"It's absolutely vital that we have all the data and we use it in an evidence-based manner, so we provide better care and better quality of care to patients," said Price. "But we need our physicians to be patient facing, not computer facing. What we're going to try to do is encourage, from a regulatory standpoint, an interoperability at the 60,000 foot level."

"As a patient, I need my data to flow more smoothly," said Debi Willis, CEO and founder of PatientLink Enterprises, which incorporates patient data with EHRs.

2. Be transparent. "Knowing how much faith to put in a doctor requires transparency," said Elizabeth Cohen, senior medical correspondent for CNN. Cohen talked about a story she covered in which the Kentucky Children's Hospital refused to release their pediatric heart surgery mortality rate after families reported a number of deaths and the hospital's chief heart surgeon, the only doctor to perform such surgeries, was put on paid leave.

Tom Delbanco and Jan Walker, talked about their OpenNotes initiative, which pushes physicians to share their visit notes with patients. While it is a patient's federal right to access notes taken by their doctors, nurses, and other clinicians, only 3% of patients in the U.S. actually have access to them, they pointed out. According to the organization's research, 99% of patients said in a study that they would be interested in seeing the notes, said Walker.

Delbanco and Walker were awarded Datapalooza's Health Data Liberator Award, which recognizes people who use health data to make improvements to the healthcare system.

"Our hope is that this will nudge providers to more openness," said Walker.

3. Patients want data. For a conference held in Washington, D.C., with a large proportion of attendees serving the public sector, I was surprised by the number of patient advocates who attended and spoke. They share firsthand experiences and frustrations with healthcare data, such as the difficulty at which to get access to it, and the need to go to each physician individually for medical records if they go to separate physicians for different conditions. And, the overall consensus was that patients want their data, and they want to use that data to discuss treatment options with their physicians.

Dana Lewis, an algorithm developer and consultant at Lewis & Leibrand, talked about hacking into her own insulin pump to make her alerts louder. "My greatest fear is to die in my sleep," said Lewis. But neither her physician nor the device manufacturer could help her make the alerts louder.

"Let's open it up to all the amazing things that can happen when we give data to the hands of the patients," said Lewis.